Keechmatters The magazine of Keech Hospice Care ‘I can continue to be a mum and wife at home because I share my worries at Keech’
How Keech Hospice Care helps a special mum
Harry Mathias and Keech Hospice Care: stars of BBC TV Children in Need
An amazing Royal visit ■ Meet Ron, our award-winning, green-fingered volunteer ■ Follow Keech nurses out and about, helping families in their own homes
Your Events Guide 2017 inside!
Get involved: if not now, then when?
Letter from Liz
he spring issue of Keech Matters always feels like an invitation to look back at the highlights of 2016 – and peep forward to see what lies in store for our charity in 2017. 2016 was an amazing year for Keech Hospice Care. One of the greatest highlights was the Royal visit (see right), which generated fantastic global coverage. But it wasn’t the only time last year camera crews made a beeline for our hospice. In June, the Good Morning Britain team came to Keech to celebrate the selflessness of ‘Super Dad’ Martin Rackley when caring for his daughter, Ruby, 3. Then, in November, BBC Children in Need gave valuable air time to Keech Hospice Care’s bereavement support service (see page 4). Then there is Rob Figgins, who made a socialmedia film for Keech which went viral and made internet sensations of Rob and his friends who attend our Keech Palliative Care Centre (full story on page 14). The year ended on a high note, too, with hectic times in our shops and a strong seasonal boost for fundraising and donations. A heartfelt thank you for all your generosity and kindness at a time when money for many is tight.
So we steam into 2017, when I feel the main themes will be learning and innovation, as we continue our journey from being a good organisation to being a great one. Learning because we are starting a new Keech Hospice Care research post this year: we are always striving for excellence in care and this post will ensure the charity is at the forefront of research into caring for children with terminal or lifelimiting illnesses. Moving to innovation, in fundraising, we are introducing new events, like our Glow Walk, and putting a brand-new spin on others. Your Events Guide 2017, which comes with this issue, takes you month by month through our exciting event timetable. Finally, our charity must be innovative in the way we work as an organisation. Given the present economic climate, this coming year will be a really challenging time financially. So we need to be as efficient and effective as possible. We rely on supporters like you to raise money for us. You need to know we are trustworthy and committed to spending your hard-earned donations as effectively as possible when it comes to delivering the wonderful support associated with our charity.
In this edition Welcome
News in brief
Taking away the worries for seven-year-old Harry. What’s on in 2017!
Community nurses: caring from hospice to home.
Christmas fundraising events go crackers.
Yours, Liz Searle
We want to connect with you! Like us on Facebook www.facebook.com/keechhospicecare
Sign up for our lottery
Julie’s experience of needing both Keech’s adult and children’s care. Ron Willett: keeping Keech beautiful for 16 years.
Follow us on Twitter @KeechHospice Watch us on YouTube youtube.com/keechhospicecare Email us at email@example.com Visit our website
We support... adults living in Luton and South Bedfordshire and children and their families living in Bedfordshire, Hertfordshire and Milton Keynes. We deliver... a range of services including in-patient and day services, community services, care and support for children, and a befriending and support service for adults in the community. We need... to raise more than £5 million from public donations to deliver our services this year. This amounts to around £14,000 a day, every day. We also need volunteers, without whom we could not deliver our range of services to the people who so desperately need them. Email firstname.lastname@example.org www.keech.org.uk
Give vital support to Keech Hospice Care through ‘Gifts in Wills’. # I am more than cancer: # I am Rob. One man’s refusal to ‘go in the corner and cry’.
News in brief
Royal visit from the Duke and Duchess of Cambridge
provides for seriously ill children and adults. What’s more, it went to prove we’re not a bleak and scary place but a hospice full of life where living really happens and quality of life is paramount.” To find out about this year’s KeechFest on 10 September, visit www.keech.org.uk/keechfest.
KeechFest 2016: get with the beat!
Get your GLOW on for Keech
he buzz continues following the special day for Keech Hospice Care when it celebrated 25 years of adult care with two Royal visitors. Staff, patients and volunteers were treated to a visit from TRH the Duke and Duchess of Cambridge. The couple toured the children’s day support unit and teenage room, where they were presented with personalised memory jars. The Duke and Duchess were then led around the adult facility to see all of the services including inpatient care, palliative care, therapies and social work. Catherine Nelsey, a patient of the Keech Palliative Care Centre, said: “I was so fortunate to be introduced to the Duke and managed somehow to shake his hand three times! He asked me personally how Keech Hospice Care supported me and my family. I said, Keech to me is an extension of my family and I had met some wonderful people, made new friends and, without this charity, our paths may have never crossed.”
Keech treks India What do you get when you drop four nurses, one doctor, a complementary therapist, a couple of fundraisers, an administrator and a few supporters into the wilds of India? Give up? A brilliant team which battled creepycrawlies, leeches and wild elephants to raise over £41,000 for Keech! Last October, four nurses from Keech Hospice Care - along with ten other staff and supporters from the charity - trekked across the tough terrain of Kerala, South India. Shirley Gadsden, nurse manager for the adult in-patient unit at Keech Hospice Care, said the experience was out of this world: “We were worried about what we’d face. We knew it would be challenging and sleeping in tents made it more exhausting, but it was a trek of a lifetime. We walked 15km a day in the middle of nowhere. When the tough times came, I thought of my patients and it pushed me through.” Watch this space for Keech Hospice Care’s next trek in 2018. In the meantime, why not get involved in the Keech Ben Nevis Challenge this November – a fun-filled, exhilarating way to raise money for your local hospice? Find out more about this event at www.keech.org.uk/bennevis.
ook out for strange lights in the night around Keech Hospice Care on Saturday 25 March. No, it won’t be aliens landing – it’s the charity’s new fundraising event, the night-time sponsored Glow Walk, where you can get artistic with fluorescent body paints and raise money for your local adult and children’s hospice. Get the party started at the Keech UV Glow Hub at Great Bramingham Lane, Luton, from 7pm, before setting off on the 10km walk along well-lit, marshalled roads. Then it’s all back to the Keech Glow Hub and party time! 1,000 people are expected to take part so there’s guaranteed to be a fantastic atmosphere. “I’m signed up!” says Leanne, the first person to get into the Keech Glow Walk party mood. “I’m so excited to take part in this brand-new sponsored walk. Let’s get glowing!” Support your adult and children’s hospice and have fun doing it. Sign up today at www.keech.org.uk/ glowwalk or call 01582 707940. This event is for aged 16 and over.
ara Powell, a regular at Keech Hospice Care with her grandson, Shayne, 4, has been awarded the title Grandparent of the Year for her tireless commitment to Shayne, who attends the hospice for support.
he sun shone, the Keech Main Stage buzzed with talented, local musicians and more than 1,500 people celebrated Keech Hospice Care’s 25th Anniversary at KeechFest 2016. It was a fantastic party which raised £16,000! Liz Searle, CEO at Keech Hospice Care, said: “It was great to welcome so many people inside the hospice to look around and see for themselves all of the excellent services and facilities Keech Hospice Care www.keech.org.uk
Taking away the worries T
hey say worrying does not take away tomorrow’s troubles; it takes away today’s peace. When seven-year-old Harry Mathias started worrying that his little sister Sophie would die, his mum Kelly turned to Keech Hospice Care for help. “Harry was worried and I was worried about Harry,” Kelly remembered. “I guess it all started really after a couple of children who Harry was close to at Keech Hospice Care died within a few months of each other. Harry suddenly started becoming very worried about his little sister, Sophie, aged five. It's like something clicked and he realised just how fragile Sophie is. “Harry was asking questions about death and dying, and I was concerned about not answering them properly. My husband David and I realised Harry was bottling up his worries about Sophie for fear of upsetting us. “Sophie has Down's syndrome, is blind and suffers from chronic lung disease along with severe epilepsy, which has caused many additional health problems. Harry loves Sophie to bits and is very protective of her. He is a brilliant, caring big brother, even when he’s having a tussle with his ‘annoying’ little brother, Alfie, 4.
“We were obviously worried about the thoughts Harry was having and the fact he felt that he didn’t want to burden us with his worries by asking questions about Sophie and what might happen to her. I was worried about dealing with things in the wrong way and making it harder for Harry. I wanted him to be able to speak to someone impartial, someone he could properly open
“People are often surprised to hear about pre-bereavement support and assume my job is just about helping people whose loved one has died,” said Natalie. “Pre-bereavement support is a fantastic service which Keech Hospice Care is able to offer. It’s so important and beneficial for both children and adults. Children, in particular, can struggle to manage their feelings and this can impact
“It's like something clicked and he realised just how fragile Sophie is. Harry was asking questions about death and dying, and I was concerned about not answering them properly.” Harry’s mum, Kelly up to. Keech Hospice Care and its bereavement support team helped Harry’s worries disappear,” said Kelly. Harry was helped by Natalie Watson, whose position of family support worker at Keech Hospice Care is funded by money from BBC Children in Need. “Harry is brilliant,” said Natalie. “He’s bright and energetic, and you can see he loves Sophie and his family very much. Harry might be seven years old but he’s definitely wiser and older than his years!
upon many aspects of their lives. Pre-bereavement support can help people to cope better with the death and dying of their loved one, and help children and adults to feel more prepared for when that sad time comes. “People do find talking about death hard and naturally Kelly was concerned about not frightening Harry. But, as a family, Kelly and David have always been very honest with Harry about Sophie’s condition. “Over a few months, Harry and I explored topics such as family, feelings, worries and memories, not only here at the hospice itself but, to start with, I visited Harry at his school and worked with him there. “Harry shared lots of difficult feelings and worries. He struggled to put all of these into words so we did lots of creative activities to help him explore them and find a way of leaving them behind.”
Natalie with Harry www.keech.org.uk
arry also created a memory jar, which was an emotional but powerful therapeutic process. “Memory jars encourage children and adults to think of special memories of their loved one and share them with others,” explained Natalie. “The process involves separating sand into four or five piles before colouring each pile with different coloured chalk and layering it in the jar. The process of colouring the sand can evoke strong and
emotional responses. Importantly, it can also reduce the fear of forgetting memories while acting as a beautiful keepsake. Harry’s jar helped him to share some very happy and also difficult memories of Sophie.” Mum Kelly agreed that, by the end of his sessions, Harry was no longer carrying around his worries. “Harry did an exercise with Natalie where he made plasticine shapes for each of his worries,” said Kelly. “At the end of the session, he discussed those worries with David and me. Then, once he’d shared them, he decided to rip them up as he didn't need to worry about them anymore. He ripped the plasticine into tiny pieces and immediately it seemed a weight had been lifted from him. “The support we’ve received as a family from Keech Hospice Care has been amazing and made such a difference to us as a family. Harry
Harry with his sister Sophie
“Children, in particular, can struggle to manage their feelings. Pre-bereavement support can help children and adults to feel more prepared for when that sad time comes.” Natalie Watson, family support worker at Keech Hospice Care is more relaxed and comfortable in his own skin. Thanks to Natalie and Keech, Harry is able to live a normal life like any other seven year old without pondering on his worries – as his parents, we couldn’t ask for more.”
arry now attends Keech Hospice Care’s Sparklers: a monthly support group for siblings and family where he can socialise with other children in similar situations. When it comes to his worries, Harry has put them behind him. “I was worried about Sophie and some things but I'm not worried about them anymore because Natalie’s helped me get rid of them,” said Harry. “I was worried about hearing bad things about Sophie and not understanding what was going on. I just wanted my family to be
OK. Now I feel more relaxed and my memory jar helps me remember stuff in the past. It also keeps me happy because I like remembering fun memories and good times. Sophie
means a lot to me and Natalie means a lot to me. Natalie is very helpful and she has made me feel much more confident about things.” Harry and his family - along with Natalie and Keech Hospice Care were the stars of BBC Children in Need’s 2016 appeal night on BBC One on 18 November 2016. You can watch Harry’s story and see the amazing work done by Natalie, bereavement support and Keech Hospice Care at www.keech.org.uk/ children-in-need.
Keech Hospice Care: making the difference when it matters the most. Harry’s story is just one of the incredible things that your support helps us to do. From the moment a child is diagnosed until their death – and for however long is necessary afterwards – we’re here to support the entire family and help them make the most of the time they have together. Through our community and hospice-based teams, we provide specialist care for children across Bedfordshire, Hertfordshire and Milton Keynes. We also offer a wide range of services including art and music therapies, complementary therapies, social work support and hydrotherapy, which are all intended to support the child, their parents and siblings. We can only continue, however, to offer our personalised approach to care thanks to the generosity of supporters like you. If you would like to be part of making the difference for children and their families, you can donate online today at www.keech.org.uk/donate.
Fundraising fun 2017 Let 2017 be the year you get into some of the fantastic fundraising activities that take place on behalf of Keech Hospice Care. We will support you every step of the way! Get fundraising!
■■ On 10 September, join the KeechFest party, held in the beautiful gardens of the hospice, with lots of live music and family fun. ■■ On 25-26 November, Santa makes his first appearance at the Keech Christmas Market in Luton. ■■ Plus look out for a range of other community events around the region. Every year, we need to raise £5.2 million. As a charity, we depend on local communities for our survival. We’re enormously grateful for
Get the rush!
■■ Put your best foot forward in Keech-organised events like the brand-new Glow Walk on 25 March, the Keech 10km Trail Run on 14 May and the Colour Dash on 16 July where you can turn Luton into a rainbow cloud of colour. Plus the two Santa Runs in Luton on 3 December and Bedford on 10 December! ■■ Join Team Keech at any number of marathons taking place from Milton Keynes to Brighton – or perhaps you are up for the London 2 Brighton 100km Challenge? ■■ Pedal power isn’t forgotten, either, from the completely do-able 54mile London to Brighton Cycle Ride on 17 September to the rather more challenging 237-mile London to Paris Bike Ride on 19-23 July.
“The sense of achievement I felt when they hung the medal round my neck was something I cannot describe and to know that I played a tiny part in raising funds for the hospice was great.” Karen Farrell, Ride London biker Get the buzz!
■■ For an adrenalin rush, spring is your time of year, with the Keech Skydive starting on 18 March - with two more opportunities to launch yourself into the blue on 24 June and 16 September! ■■ An exhilarating activity that takes you up instead of down is the Keech Ben Nevis Challenge on 3 November – can you take on GB’s highest peak?
whatever you can do or give. It’s invaluable and will make all the difference to your neighbours, friends, colleagues or maybe even your own family if they need our help.
“Great course, wonderful scenery and made ‘easy’ because of why we were all running.” J Roberts after completing the Keech 10km Trail Run
Get involved: if not now, then when?
To find out more about what’s going on this year, dip into Your Events Guide 2017, which you’ll find inside this issue of Keech Matters, or visit Tel: 01582 707940 email@example.com www.keech.org.uk/whats-on. www.keech.org.uk
Get involved: if not now, then when? www.keech.org.uk
We’re there wherever you need us... Keech Hospice Care nurse Nina Knoop showed how vital our community service is to end-of-life children right from her first visit to teenager Francesca Rumble, who wanted her care and support to be based at home with her family.
eventeen-year-old Francesca Rumble, from Bedford, was referred to Keech Hospice Care in July 2016. “The doctor at the hospital told us Fran only had two weeks to live and there was nothing more they could do,” said Fran’s mum, Sharon. “I heard the word ‘hospice’ and immediately thought no, hospices are for dying. The last thing I was looking for was somewhere to ‘put’ Fran for her last days. I wanted Fran at home. But at the time I didn’t know what Keech Hospice Care was really like. And Fran didn’t have to go to the hospice; Keech community nurses came out to us to take care of her.”
‘She started to get migraines’
ran’s cancer was first diagnosed in July 2012, after a CT scan when she was 13. “A little while after the scan, a nurse came out and asked to speak to both me and Fran’s dad,” Sharon recalled. “I could tell by the way she asked to speak to us both that there was something wrong. Then she told us Fran had a brain tumour. “You hear those words and it’s like being in a goldfish bowl: you see mouths moving, people telling you things, but you can’t take it in.” Fran began a tough course of chemo and radiotherapy and, in February 2014, the family was told she was clear of the tumour. Life went back to normal. “Then, in July 2015, Fran started getting migraine headaches again,” remembered Sharon. “She had an MRI scan which showed that the brain tumour was back, but not in the original spot.” Fran also had cancer of the spine. Fran started a course of high-dose treatment including steroids to help control the pain, although these often made her drowsy and unable to walk. Despite this, Fran got on with her life as normally as possible, going to school and passing her GCSEs. But, by July 2016, the hospital made the decision that treatment was not working and Fran should be offered supportive care for the time she had
left. It was at this point that Keech Hospice Care became involved. “Having community nurses means that young patients at end of life can live more normally, at home, with Mum, Dad, brothers and sisters,” said Keech Hospice Care community nurse Nina Knoop, who has been supporting Fran and her family.
future right up to the end. That was exactly how we wanted her to be.” For this reason, Sharon was not at all sure about Keech Hospice Care being involved in Fran’s care. Even after home visits were arranged, Sharon was worried about Fran seeing the word ‘hospice’ on the
“You hear those words and it’s like being in a goldfish bowl: you see mouths moving, people telling you things, but you can’t take it in.” She meets quite a few patients and families who, like Sharon, are initially wary of anything that involves a hospice. But Nina strongly believes community nurses are ideally placed to build families’ confidence in what Keech Hospice Care can offer. “It takes time to change a mind-set,” she said. “But, because we get to know the patient and family well, we become a trusted link between the family and health professionals.”
community nurses’ uniforms. So Keech’s nurses tended to dress more casually for these visits and Fran never seemed to notice the small ‘Keech Hospice Care’ stitching on their tunics.
She also feels that community nurses are in a good position to spot problems early on simply because they are used to seeing the family when they are relaxed and open, and can tell when they have something on their mind. “On visits, I usually have a cup of tea and a chat, and it’s then that I realise they are not coping as well as usual. If mum and dad are worried about something, they often feel it’s not enough of an issue to go to the doctor with. But, when I see them, they will tell me and I can instantly assess and reassure them.”
‘We wasted a month’
he news that Fran might only have two weeks to live made Sharon and the family feel numb: “We couldn’t stop thinking that she only had two weeks. We wasted a month in that state, just thinking about it.” It was their choice when the family made the decision not to tell Fran that the cancer was terminal. “If I had told her, she would have just given up. As it was, Fran was thinking about the
Francesca on her Prom Night www.keech.org.uk
At first Fran felt much like her mum – she didn’t want any help from nurses – but both Sharon and Fran changed their minds forever about Keech Hospice Care when Nina showed them how vital these visits could be. On her first visit, Nina arrived to find Fran in excruciating pain from a migraine headache so extreme that she didn’t know what was going on around her and she couldn’t even lie down. “I was so frustrated that we couldn’t help her,” said Sharon, “but Nina soon got to work putting everything in place so Fran quickly got the drugs she needed to control the pain.” Then, the next day when Nina came back, Fran was back to her normal self. Sharon smiled: “You could say Nina arrived that day – and Keech Hospice Care community nurses haven’t left since!” Keech nurses came every day – including weekends – to care for Fran. Sharon remembered how outspoken and direct her daughter was: “Although Fran never complained about any of the treatments, the nurses soon got used to the idea that what Fran wanted to do, she’d do. Nina became a bit of a guru at guessing how she would react.”
In August 2016, the family went on holiday to Whitstable and Nina made sure everything went smoothly by organising Fran’s medications and “liaising with Whitstable’s nearest hospice in case support was needed. The family were able to have a sunny, worry-free break by the sea. “Fran even got a suntan,” said Sharon. The relationship between Fran and her Keech community nurses and doctors was very relaxed. “The nurses did the medical stuff first then it was
She said she doesn’t like putting a time on a visit. “We stay as long as we are needed and, with end-of-life patients, that includes overnight if symptom management is needed. Keech Hospice Care’s community nurses are on call 24 hours a day.”
‘No-one expected her death’
n July 2016, the hospital had only given Fran two weeks to live; it wasn’t until November 2016 that she died. “That day Fran had stayed at home rather than going to school.
“Patients in the community receive the same service as those who are at the hospice.” all social after that,” Sharon recalled. “There was always a lot of banter – sometimes we’d all be in hysterics. Keech nurses fitted in like we’d known them for years.” “Patients in the community receive the same service as those who are at the hospice,” said Nina. “We take with us medical equipment boxes that contain everything we could possibly need. We even collect medications from the pharmacy for patients.”
She felt sleepy due to a change in drugs a few days beforehand,” Sharon explained. “But no-one expected her death. It was very peaceful, very calm, and everyone got to see her either before or just after she died. Later that day, when her brother Nathaniel came home from school, he went upstairs into her room as usual and hugged her.” Fran’s body initially went to a funeral home but Sharon brought her home: “This is her house; she was going to leave from here.” Her coffin was placed in the front room and Sharon and Nina remembered sitting on sofas either side of it and talking to each other across it. “We couldn’t see each other because the coffin was in the way. We had to smile about that. Fran would have found it funny.” Post-bereavement, Keech Hospice Care continues to support the family – visits don’t stop because the patient has died. Nina still goes to see Fran’s family when needed and, for Sharon, the Keech nurse is an important presence in family life: “Even though it’s happened and Fran is no longer here, I’ve still got a friend in Nina.”
Nina out and about for Keech Hospice Care www.keech.org.uk
To help keep Keech Hospice Care’s nurses on the road, please donate on 01582 707940 or online at www.keech.org.uk/donate.
A cracker of a fundraising Christmas at Keech Hospice Care From running to remember in the 2016 Santa Runs to a very Smiley Sam, Christmas at Keech was full of sparkle. Keech’s Santa Runs: the ‘perfect event’
ive-year-old Ella Russell loved Bedford’s Keech Santa Run in 2015 – which was sadly just after her little brother Harry had died – and in December 2016 she wanted to take part herself to remember Harry and raise money for Keech Hospice Care. And Mum and Dad joined in, too! The two 5km sponsored runs in Luton and Bedford saw 678 Santa and elf participants leave their sleighs at home and run, jog or walk the flat route around Luton’s Wardown Park and along Bedford’s Embankment. Altogether, they raised £36,000 and rising, which will go towards helping Keech care for patients with lifelimiting or end-of-life illnesses. Three-year-old Harry Russell was looked after by Keech Hospice Care until his death in November 2015 and his family wanted to give something back. “Keech made Harry’s final year very much about life and gave us so much support,” said Harry’s dad, Mark. Harry’s mum Julie said Bedford’s Santa Run was the “perfect event” by which to remember their son. It seems a lot of local people felt the same. To find out about or sign up for Santa Run 2017, go to www.keech.org.uk/santarun or call 01582 707940.
Smiley Sam raises a festive £41,000
e’s much loved by the people of Luton and, once again, Smiley Sam didn’t disappoint. Along with Santa, Smiley Sam – a firm Keech Hospice Care favourite - braved the cold and frosty nights to travel the local area collecting for Keech. Volunteer driver Hannah Patrick said: “It was brilliant to see the children waiting for Smiley Sam to
come up their road. People came out of their houses to talk to Santa and put money in Smiley Sam’s buckets, which was brilliant.” Over 26 nights, Smiley Sam covered more than 1,300 miles and - together with our Sleigh, supported by Friends of Keech Bedford - we raised an aweinspiring £41,000 for Keech Hospice Care. Thank you to our amazing volunteers, who gave 1,000 hours of volunteering, and to Volkswagen Financial Services, who loaned us the car needed to tow Luton legend, Smiley Sam, around town.
Local communities get their ‘claus’ into fundraising
016 saw the launch of our sparkly new Christmas fundraising event, Santa Day, where Keech Hospice Care encouraged businesses, schools, families and friends to host a special, fun-filled day dedicated to all things seasonal. Local communities across Bedfordshire, Hertfordshire and Milton Keynes got involved in a whole sackful of activities from dressing up, bake-offs, bauble-and-spoon races, quiz nights and present-wrapping races – all with a Christmas theme. Among the organisations that got involved were Hertfordshire County Council Legal Services (see their photo below), Ragdolly Annas in South Beds and the Dunstable branch of Loomis UK. “A close friend of my husband attends Keech and he has spoken about the great work it does,” said Loomis organiser Sam Johnston. “When I saw the Santa Day online, I decided it would be great to do in the office.” ‘It was amazing fun and I will definitely be doing this next year,” said Jenny O’Regan at Ragdolly Annas.
Christmas Appeal: a letter from Julie
he Keech Hospice Care Christmas Appeal was launched in December with a strongly motivating letter from Julie Tipler, whose story you can read overleaf. Local communities responded with overwhelming generosity, raising £19,000 to ensure Keech Hospice Care can continue its work into the future.
Lots of tinsel-bedecked fun was had by all and local communities have raised £5,000 so far for Keech Hospice Care. A huge thank you to everyone who joined Santa Day 2016. Watch this space for news of Santa Day 2017!
Chief Executive of Keech Hospice Care, Liz Searle, said: “We try to get patients home on Christmas Day if we can - even if it’s just for a few hours - but for those too poorly to travel we work hard to bring the spirit of Christmas into the hospice.”
To find out what’s going on this year, call 01582 707940 or visit www.keech.org.uk/whats-on. Get involved: if not now, then when? www.keech.org.uk
‘Keech Hospice Care helps me continue to be a wife and mother’ P
eople think hospices are where you go to die. For one family, Keech Hospice Care has been a place which has enabled them to live and deal with the unthinkable – the death of a child. Now, our charity is here again for mum Julie Tipler, 43, as she has been diagnosed with secondary breast cancer. Here, Julie speaks openly about how the family is coping and how Keech is helping them to come to terms with their grief. I always knew I wanted children and I wanted a boy first. Jamie came along and we had some wonderful years as a family of three. Then we decided it was time to extend our family and Sophie was born.
Worries about Jamie
t was Easter-time the following year when life started to change. One morning when I was lying in bed, Jamie came in and said he had a headache. That was the first of many headaches. He also started being sick. We went to the GP, who referred us to a neurologist. Following a consultation, she thought it was most probably migraine but advised us to have an MRI scan.
doors at the entrance. I remember one of the parents - who was a GP – saying, “Something is not quite right.” An ambulance was called and, when we got to the hospital, he was examined by a junior doctor who asked whether Jamie’s mood had changed. That is when I felt sick – really sick. At the time there was a story in Emmerdale where the character’s mood changed and it signalled a brain tumour.
Jamie was at prep school. One day, as he was getting out of the car, he said he felt giddy. He started to walk towards school and the next thing he was collapsing into the two solid
Following an MRI scan, my husband Kev and I were pulled into a room. They suspected a brain tumour. Not just any old brain tumour – but one that was ‘quite severe’.
Jamie was the best older brother anyone could hope for. He was so caring, always looking out for Sophie. At the same time they did also have the usual brother/sister arguments. When he had friends over, she would want to be involved. Bless him, he would let her join in for a bit but then would naturally want her to go away. What I wouldn’t give to hear those arguments again.
First sign of trouble
year after Sophie was born, I was diagnosed with breast cancer. I was so frightened of dying. I kept thinking, I have got to get through this for my kids. I was full of fight as I had everything to fight for. I had an operation to take the cancer out but, because the tumour was 10cm, I needed a second operation. We were thrilled when we got the news that the treatment was successful; the doctors were satisfied they had got it all out after the operations and six rounds of chemo and radiotherapy. We were always very honest with Jamie. We told him that mum had cancer, it was curable and I would live through it. I remember when I lost my hair - he would get the handheld vacuum out and vacuum it up. By 2012 I had had the majority of my reconstructive surgery done and life for us went back to normal.
Julie relaxing in the garden at Keech Hospice Care www.keech.org.uk
Jamie underwent surgery that was scheduled to take five hours; it took 10. The tumour was attached to a critical part of the brain and the surgeons couldn’t get it all out. We were told that he wouldn’t see out the year. I collapsed on the floor - I just couldn’t believe that Jamie would die.
Hope of a cure
e met an oncologist who said there was a 50% chance of a cure using chemo and radiotherapy but it was a really gruelling treatment. After two courses, Jamie was hospitalised with a gut infection. He went from six stone to three. However, by Christmas we were given the most amazing of gifts – the news that Jamie was cancer-free. The next six months were fantastic for all of us, until June 2014 when Jamie had a routine MRI scan that showed the tumour was back. We were in total disbelief but once again we had to pull on that inner strength for Jamie and Sophie. Because he looked so well and didn’t deteriorate, we started to allow ourselves to believe the hospital had got it wrong. Then, on 2 January 2015, Jamie had a seizure and we were told there was nothing more that could be done. We made the decision that we wanted to go home. We wanted Jamie to die at home, surrounded by all his things and the people who loved him the most. Jamie’s community nurse suggested we get some support from Keech Hospice Care. The word ‘hospice’ suddenly made it all very real.
Dr Hannah helps out
eech Hospice Care’s children’s doctor, Dr Hannah, came over with Carly, one of the community nurses. Jamie and Dr Hannah hit it off straight away - there was no awkwardness at all. Over two years the specialist had got hardly a word out of Jamie, yet here he was chatting away to Dr Hannah. His speech came back but his memory was poor. Then, three weeks after coming home, he had a massive seizure and we were told that he www.keech.org.uk
would probably die within the next 24 hours. However, he went on to live another week, with Keech nurses coming in daily to take care of him. We all camped out in the bedroom so we could be with him at all times. Towards the end of the week, though, he was really sick.
Palliative Care Centre at the hospice where I met the lovely senior staff nurse Angie. She outlined all the ways the Centre could support me. I still felt apprehensive and didn’t really think Keech could make that big a difference to my life. But now I come to Keech every Wednesday
‘Sometimes I think life has been so incredibly cruel to us. Yet life goes on and, whilst the medical profession can do no more, Keech Hospice Care can help us achieve the best possible life together.’ On 28 January 2015 at 12.50am, Kev called out to me. I woke up just in time to catch Jamie’s last breath. We had some moments of our own first. And then we called the Keech Hospice Care 24-hour helpline and one of the children’s nurses came out. To have the Keech nurse there was wonderful – it made such a difference. After the funeral we were offered Keech Hospice Care’s bereavement services. I was very worried about Sophie so we decided to try music therapy with Keech music therapist Nathan. It has made such a difference and they have built up a great relationship, based on trust. Sophie actually counts how many sleeps until her next session. Nathan has extracted so much from her. Keech provided me with a bereavement support volunteer. I was very nervous at first. However, as soon as I met Karen, I felt like I had known her for years.
Another blow to the family
started to feel ill in April 2015. An X-ray showed that my left lung had collapsed due to cancer and, 24 hours later, I was told I had secondary breast cancer. In one day I had my lung drained, was referred to Oncology and started treatment. A biopsy found it was also in my bones. In 2016, I was told it had spread to my liver, too. I was referred to the
and I am part of what we call ‘the Wednesday girls’, which is made up of patients Keech is also caring for. What with chatting to the girls, reiki, doctor appointments and doing work on my memory box, I could hardly fit everything in. After spending a day at Keech Hospice Care, my home life is a lot easier. I can continue to be a mum and wife at home because I share my worries at Keech. I leave Keech feeling so much lighter. We have told Sophie the truth about my prognosis. Keech Hospice Care advised us that it really is best for the child to be honest. When I told Sophie, she asked if it was getting-better cancer or dying cancer. She now says, “I know we have to be nice to Mummy – her cancer is getting worse.” My biggest fear with getting sick was always about the pain. However, with Jamie, I have seen first-hand how Keech helped to manage the pain so that fear has gone. Now I fear leaving my family but I know they will be strong and help each other through it. And I also know that I will be with my Jamie and he won’t be alone any more. To help us care for more patients like Julie, please make a donation. Call us on 01582 707940 or go to www.keech.org.uk/donate.
Keeping Keech beautiful for 16 years: our green-fingered volunteer Ron Willett I
t’s said no-one has made it through life without someone’s help. When it comes to Keech Hospice Care’s 1,600 volunteers, never has a truer word been said. As a charity, Keech could not survive without people giving their time for free. At 84 years young, Ron Willett, Keech Hospice Care’s head gardener, has officially been recognised for 16 years of dedication to the hospice.
If you didn’t know better, you’d think Ron Willett was a full-time member of Keech Hospice Care staff. As the charity’s head gardener, Ron’s dedication means he’s at the hospice come rain or shine most mornings often before staff arrive. Along with his team of gardening volunteers, for the past 16 years Ron has ensured the large gardens at Keech are beautiful and kept to the highest standard.
No job asked of Ron is ever too big and he greets all patients, staff and volunteers with a smile as he modestly goes about his work. Ron became a volunteer at Keech Hospice Care after his wife, Rita, died from pancreatic cancer at the hospice in July 2000. Ron remembers: “Rita attended the day hospice and she looked forward each week to meeting other people there. When she died at the hospice, she said to me, I know this will be my last visit. The care she received and pain relief given was a great comfort to her. The nurses at Keech are very special people. The dedication and care they gave to Rita was outstanding.” Week in and week out, Ron devotes all of his spare time to ensuring the gardens and grounds at Keech Hospice Care continue to be a welcoming sight to visitors and a sanctuary for play, relaxation or reflection for patients, staff and volunteers. Ron says: “Back then, I asked if there was any chance of joining the garden volunteers at Keech Hospice Care. I was accepted and joined the team of five dedicated gardeners. All the gardeners put as much time as possible into these large gardens. The staff at the hospice are so friendly, it is like having an extended family.” It is little wonder Ron was awarded the Volunteer Gardener of the Year Award 2016 by Hospice UK and Best Volunteer of the Year in Luton’s Best Awards 2016. During their visit to Keech Hospice Care in August 2016, Their Royal Highnesses, The Duke and Duchess of Cambridge, personally asked to meet with Ron as they were so impressed by his services to the charity.
“Ron’s dedication means he’s at the hospice come rain or shine most mornings - often before staff arrive.” www.keech.org.uk
The hours Ron gives to Keech Hospice Care every week are unbelievable. His voluntary dedication and commitment continues even after he’s left the hospice. Ron spends hours at his home growing and planting beautiful pots and hanging www.keech.org.uk
Where there’s a Will… K One of the greatest gifts you can give in life is your time and Keech Hospice Care thanks all of its volunteers for the precious time and skills they give to their local hospice. We have so many opportunities to choose from! If you would like to volunteer for Keech Hospice Care, please email firstname.lastname@example.org or call 01582 497829. baskets which adorn the entrance and gardens of Keech Hospice Care and bring much joy to staff and patients alike. Thanks to Ron, the hospice’s gardens provide a beautiful setting for reflecting, relaxing and escapism. At a time when a person needs peace and quiet, Ron’s tranquil gardens are there: on sunny days, patients can relax and revitalise surrounded by the scents and sounds of nature. At a time when families want to sit, enjoy a picnic, laugh, play games and make memories – Ron’s gardens are there. At the time when a patient can no longer leave their room, the courtyard garden outside their window is there for them to look out on, thanks to Ron and his dedicated team.
eech Hospice Care is only able to care for those living with a lifelimiting and terminal illness because of the generosity of our wonderful donors; our charity depends on the local community for the majority of its funding, which means we need over £14,000 every single day in donations and fundraising. One way that people can show their support for Keech Hospice Care is by leaving us a gift in their Will. As many as one in seven of the patients we care for is down to donors who remember us in this way. You don’t have to be wealthy to make a difference to those we care for at Keech Hospice Care. Gifts in Wills to the hospice come in all shapes and sizes, from specific cash gifts to a percentage share of the estate. Large or small, all these gifts help our patients and their families at a time when they need us the most. Your generosity helps us to make the difference when it matters the most.
Some people put off making a Will (or updating an existing one) because it seems complicated. But it is easier than you might think. It’s also the only way to ensure that, after your death, your family and friends are provided for as you would wish them to be. And, once you have protected your loved ones, please consider us, too. Your gift to Keech Hospice Care will cost you nothing today yet make a world of difference to those we care for tomorrow. In recent months we have received over a dozen gifts in Wills, all of which will play a vital part in ensuring we can continue to be here for patients when we are needed. Our heartfelt thanks and appreciation go to those people who have so thoughtfully and generously remembered us in this special way. For more information on leaving a gift in your Will to Keech Hospice Care, please contact us on 01582 707942 or at email@example.com.
Make A Will Fortnight Many thanks to the seven solicitors listed who participated in our Make A Will Fortnight, from 3-14 October 2016: BBW, Breeze & Wyles, Machins, Pictons, Neve, Sherrards, Taylor Walton. These solicitors generously gave their time and expertise to help make (or update) 56 people’s Wills in return for a donation to Keech Hospice Care, raising £6,500 in the process.
Sign up now at www.keech.org.uk/glowwalk
Saturday 25 March 2017
Glow Hub opens at 7pm Walk starts at 8pm
The ultimate Glow Walk! Join us for a sponsored 10km walk with a difference.
Registration only £15 per person (16years+). Participants are required to raise additional funds through sponsorship. (Guidance dogs only) Keech Hospice Care, Great Bramingham Lane, Luton, LU3 3NT www.keech.org.uk
#I am more than cancer. #I am Rob (Luton Town’s my team), I enjoy a nice pint, and I love Chaz and Dave. I was a self-employed painter and decorator; I am now what I like to call a ‘cancer-bound househusband’ - I do all the cleaning and ironing. Life has changed but I still go here, there and everywhere; it just takes a little more planning nowadays. And, since I’ve had my stoma bag fitted, I am not in so much pain.
Rob with health-care assistant, Rosie
hanks to the power of social media, Rob Figgins and other patients at Keech Hospice Care’s Palliative Care Centre became an internet sensation following Hospice Care Week. It all kicked off when our hard-hitting #I am film made an immediate star of Rob and his upbeat attitude towards his terminal cancer. I never think “Why me?” when it comes to having cancer. I think “Why not me?” I tell everybody I’ve got it – from the postman and the lovely lady who serves me in the corner shop to a stranger on the street. Anyone who’ll listen. I even wear a T-shirt which says: “Spotty face due to chemo.” I reckon, given I’ve got terminal cancer, I am going to
embrace it. I’ve even started going to my local hospice every week for a day out. Are you shocked by my behaviour? Is it too brash? You see, I understand you’ve got to be a certain kind of person to act in the way I do. I recognise not everyone thinks like I do when it comes to having probably about a year left to live. But, that’s me. I am not cancer: I might have it, but I am still Rob. I’ve always been an upbeat, up-for-a-laugh, larger-thanlife kind of bloke. Having cancer won’t change that.
I am not in so much pain now
am 45 years old, divorced with two children; I have a girlfriend and two step-children. I like sport
Keech Hospice Care: making the difference when it matters the most. Our hospice-based teams provide specialist in-patient and out-patient services for adults across Luton and South Bedfordshire. Our expert clinical support team helps manage symptoms, alleviate pain and support patients’ physical, emotional and psychological well-being. We offer a holistic approach to care which includes pre- and post-bereavement support, art, music and complementary therapies, and social work support. However, we can only continue to offer a personalised approach to care thanks to the generosity of supporters like you. If you would like to be part of making the difference for our adult patients and their families, you can donate online today at www.keech.org.uk/donate.
With cancer, I’ve always felt, if you’re going to beat me eventually, let’s see what I can do before you get me. Don’t get me wrong - I do have my bad moments. One of the worse times was when I was first diagnosed. People started sending me nice messages on my Facebook page and cards full of wonderful words. That was quite emotional. But this is my new life and I am embracing it the best I can. I can go in the corner crying about it but, when I come out of the corner, cancer will still be there. Family wise, of course everyone was upset when I first told them, but I am lucky. I have a close family and a sister who comes around every day, and my girlfriend has been great. In fact, when it comes down to it, it might sound strange to you, but I think I am a pretty good person to have cancer. When I do have negative thoughts, I try and counteract them. After all, I have older children and I’ve seen them grow up; it would be worse if they were babies. A Macmillan nurse referred me to Keech Hospice Care and I love it! It’s a lot better than I thought it would be. I thought Keech was only about end-of-life care and it would be full of cancer patients, but everyone’s got all sorts wrong with them. What I didn’t realise was how much Keech Hospice Care does for people like me given where I am in my life right now.
I need to be who I am
thought Keech would be negative or full of people always talking about dying. But it’s a positive place – seriously! I started going to Keech Hospice Care and its Palliative Care Centre every week from June last year. You can’t beat the brilliant volunteers’ nice cup of tea
first thing and the warm welcome you get as you walk through the door. I have a chat with the lovely nurses about how I feel, have my bloods taken and get the advice I need to carry on being who I am. Keech is comfortable; it’s relaxed. I love going there. The friendliness of it, the laughs we have and the nurses are just great. Who knew you could have such fun at a hospice? I love having reflexology at Keech every week. It’s one of those things that, when I was well, before I had cancer, I just used to laugh about and think, “What a waste of time!” You might be thinking that now, reading this. But, I’ll try anything once and reflexology, well, it’s lovely. I don’t think you’re supposed to talk while you’re having it, but I talk quite a lot, but it does the trick. It allows me to be calm and talk about how I am. I haven’t told you how I became an internet sensation, have I? It was brilliant! During Hospice Care Week, last October, I really wanted to help tell people that Keech Hospice Care isn’t a place where people just come to die in their final few days of life. I mean, look at me, I am proof of that! I was one of the faces of Keech’s #I am campaign and overnight myself and other patients (my friends who attend the Keech Palliative Care Centre) became a hit,
thanks to the power of social media. Our hard-hitting #I am film brilliantly shows the individual support every one of us receives from Keech Hospice Care as we battle cancer, motor-neurone disease and multiple sclerosis. As I’ve said, I am not cancer, I am Rob – Keech Hospice Care gets that. My hospice sees me, not my illness.
Keech is a special place
ou should visit Keech Hospice Care if you’ve never been. I’m serious! It’s given so much to me. I think people forget Keech is a charity because it’s so good. I wanted to give something back. I am no runner and the thought of climbing a mountain for the sake of it hardly appeals. Let’s face it, you’ve probably grasped by now, I am a bloke who likes a good time. So I organised a ‘booze cruise’ around the pubs of Luton late last year and raised more than £3,000 for Keech. My diagnosis means that I can’t go abroad and so, while on board the party bus, I asked if people had posted summer holiday photos on Facebook and, if they had, I charged them £1 towards the charity pot! Well, fundraising should be fun. I don’t think Keech Hospice Care can do any more than it’s doing – and it’s doing a great thing. It’s even offered support to my family and friends which I think is pretty amazing for a charity. I’ve decided Keech Hospice Care is where, when the time comes, I want to die. But, for now, it’s the place which helps my living to happen and the place where I am Rob. Watch Keech Hospice Care’s #Iam film at www.keech.org.uk/iam.
Sign up for our lottery
Your chance to win in the hospice lottery D id you know that you have almost four times more chance of winning in the Keech Hospice Care Lottery than previously? There are 152 prizes up for grabs! 1st prize is £1,000, 2nd prize is £250 and there are 150 runner-up prizes of £5. And if that’s not enough, four times a year lucky lottery players have the chance to win a top prize of £3,000. The proceeds raised from our lottery help us to support and care for 1 in 12 of our patients. Costing from as little
as just 14p a day, your lottery support will help to ensure we’re able to reach out to those patients and their families who need our help. Signing up to play couldn’t be easier. Simply complete the form below and return it to Keech Hospice Care Lottery, Great Bramingham Lane, Luton LU3 3NT. You can also sign up by visiting our website at www.keech.org.uk/support-us/ lottery or phone 01582 707940 to get involved today. Good luck!
YES! I want to play, win and help! Your details Title
Tel no Email I confirm that I am 16 or over and a British resident. Signature Date Data protection As a valued supporter of Keech Hospice Care, we will treat your data with the utmost respect and never sell or swap your details with anyone else. We would, however, like to keep in contact with you about our care and how you can help people living with a terminal and life-limiting condition. Please tick if you would like to opt out of communication via: Post Please tick if you would like to receive: Emails Texts Phone
Payment by standing order To (name of your bank)
Please enter me for the following:
Account in the name(s) of Account no Sort code Please debit my account and rush the money to: Payee: Keech Hospice Care Lottery, NatWest Bank Plc, 4 High Street North, Dunstable LU6 1JU Account No: 41190203 Sort Code: 60-07-08 Please pay on receipt and until further notice.
weekly chance(s) @ £4.34 = £
weekly chance(s) @ £52.00 = £
Please send your completed form to: Keech Hospice Care Lottery, Great Bramingham Lane, Luton LU3 3NT Please quote reference: (To be completed by the hospice)
Tel: 01582 707940 firstname.lastname@example.org www.keech.org.uk www.keech.org.uk Keech Hospice Care, Great Bramingham Lane, Streatley, Luton, LU3 3NT. Registered Charity No. 1035089
Read the Spring 2017 edition of Keech Matters, our magazine for supporters and find out what's been going on at the hospice.
Published on Feb 3, 2017
Read the Spring 2017 edition of Keech Matters, our magazine for supporters and find out what's been going on at the hospice.